SSI Approved and just had a NVC and EMG

    • October 23, 2012 at 5:06 am

      good news on both fronts…the emg and nvc showed that the nerves are repairing themselves and creating new sprouts. Things are within normal range now which is such a relief because even the doc was worried about something else being the cause of the pain and such. Now I must ask because I can’t find it in a search of the site…why why why do I still have constant tingling or burning or weakness or out right pain in my legs, feet, arms and hands??? If everything is okay according to the tests, why am I still dealing with this? I feel like a fool saying “I hurt” or “my legs are really weak today” or “I sat too long or walked too much and am paying for it” if everything is ‘okay’. If this is indeed the outcome and things are okay, then am I to assume that what is going on now after 6 years is about where things will remain? I haven’t noticed any changes for the better in over a year. I still experience the stocking and glove feeling, still experience days when I don’t think I will be able to tell myself just wait it out the pain will go away, right now it feels as if the nerves in my feet and lower legs are burning. I am unable to take neurontin or cymbalta or lyrica because of the really bad side effects. I asked the doctor these questions but she really didn’t seem to have an answer, but is going to schedule me for a small nerve fiber biopsy and a couple of blood tests (one for glucose to rule out diabetes, but I tried explaining to her that all of these things have been going on since 06 and my glucose is 102 to 107 after a meal. I have had it tested multiple times and it is always normal. She wants a fasting test done just in case). I know it could be worse, I totally get it, but I am entitled to expressing my own pain and worries just like the next person. Sorry but I have carried way too much guilt around thinking someone has it way worse off than I do and I shouldn’t complain or be angry at ever having gotten GBS in the first place.

      If anyone can please explain why I still hurt, why I still get so exhausted, and why the nerves are still buzzing tingling burning I would really really appreciate the info. I know I have a fibro DX on top of the GBS or because of it, but I am familiar enough with the GBS residuals to know which is what.

      ~sick and tired of being sick and tired. thank you for letting me vent and ask questions.

    • GH
      October 23, 2012 at 3:55 pm

      I’ve been recovering for a year and a half, and still have constant tingling and burning sensations in my feet. It may never go away. Even though a great deal of nerve healing takes place, with associated recovery of strength, there can be some permanent nerve damage. There is no one answer for the degree of recovery to be expected. Every case is unique.

    • October 23, 2012 at 11:19 pm

      Thank you so much for your reply. So healing or ‘the nerves have rebuilt’ is a good thing but damage is damage. Now it is time to try and heal otherwise…